Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neurological Symptoms

sugarsue

By sugarsue
in Coping with Celiac Disease

Recommended Posts

sugarsue Enthusiast
sugarsue
Posted

For those with neurological symptoms from gluten, how long does it take for them to subside after being glutened? How long did it take to feel better after going gluten free?

My 8 yr old daughter is suffering (and in turn me too). I don't know for sure it's the gluten since she has another medical condition too. But I am desperate for information to try to help her. She's been gluten free for 1 1/2 years but I could be better regarding the cross contamination or hidden gluten. I know she's been glutened recently several times from my stupidity.

Susan

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Kay DH Apprentice
Kay DH
Posted

I've been gluten-intolerant since getting the flu last September. CC results in my GI tract purging and minor lethargy, but being slapped upside the GI tract by a bit gluten hit results in a stronger reaction. I suspect everyone has different reactions, rate of reactions, and recovery times. For me, a heavy gluten hit results in depression, mood swings, and lethargy that take about 5 days to go away. GI symptoms take about 3 days. My emotions aren't severe, especially because they are due to gluten, rather than being tied to life experiences. I can ignore most of it, but that is an advantage of age, too. If I was young I think the mood swings would hit me harder, especially with the feelings of isolation that come with "not fitting in" and not being able to eat some of what most people do. There are so many unknowns and what-if's with gluten intolerance, that it takes an emotional toll even without the gluten-induced mood swings. Best wishes on your research. It takes a lot of strength to question and look for answers.

  • 2 months later...
Lindzwithaph Newbie
Lindzwithaph
Posted

I personally have really strong Neurological side effects from gluten, including: feeling irritable, depressed, "out of it" tunnel vision, inability to focus and pay attention, quick tempered, etc. For me, it partially depends on how much gluten I have ingested. For instance, if it were cross contamination, I would experience symptoms within an hour or so and may feel the Neurological symtpoms for a couple hours. If it was something more substantial (such as a cro

SGWhiskers Collaborator
SGWhiskers
Posted

It took 6 months before the neuro symptoms were noticably improved. I still have significant problems though 2 years later. Every time I get cross contamination, I get 5-7 days of terrible neuro symptoms and then 2-4 weeks of diminishing neurosymptoms. Unfortunatly, I'm hypersensitive and manage to CC myself every 6 weeks or so.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748
    Betty Siebert
    Newest Member
    Betty Siebert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.